Durga's Toolboxhttps://durgastoolbox.com
embracing special needs parenthood with courage, compassion and joyWed, 03 Jan 2018 06:39:50 +0000enhourly1http://wordpress.com/https://secure.gravatar.com/blavatar/137f06ecf5114ae39967241cb3bbba67?s=96&d=https%3A%2F%2Fs2.wp.com%2Fi%2Fbuttonw-com.pngDurga's Toolboxhttps://durgastoolbox.com
The new year as a thresholdhttps://durgastoolbox.com/2018/01/01/thenewyear/
https://durgastoolbox.com/2018/01/01/thenewyear/#commentsMon, 01 Jan 2018 12:15:31 +0000http://durgastoolbox.com/?p=1686Continue reading →]]>Every moment offers a new beginning, but there is something special about the collective transition from one calendar year to the next.

It is and always has been a struggle for me not to get too caught up in new beginnings like this, to not be spellbound in the illusion that simply resolving to change will bring change, or that most of the mundane changes I desire, will bring lasting happiness.

And yet. A new beginning like a new year, if I use it skillfully—it can be an opportunity. It is a threshold at which I can pause and listen, receive instruction and energy, and set an intention. I can investigate and appreciate what has led me to this moment, and decide what can be let go of.

Last year I participated in a program that did in fact harness the energy that exists for me in the beginning and the ending of a calendar year, called One Little Word. Created by Ali Edwards, it involves choosing a word to focus on for the year, and as she says, “to live with, investigate, to write about, to craft with, and to reflect upon.”

My word for 2017 was Soul, and using monthly creative prompts from Ali I played with the word in all sorts of ways—set intentions, created a vision board, put together a play list, and a bunch of other fun things.

I’ll be doing it again this year, and my word will be Listen. As in listening to my inner voice, to others, and ultimately, listening to what can be be called my higher power, God or the Universe. But really, there were hundreds of words that are worthy of choosing—the gift is picking one and sticking with it while it works its magic.

One Little Word allowed me to shift away from seeing the new year as a pristine piece of white paper which I should resolve not to ruin, to instead seeing it as the space in which I can play and explore with intention, curiosity and imperfection.

And just to clarify, I’m not an affiliate and don’t receive any money from Ali. As part of the class you can purchase some cool scrapbook/kit-making merchandise, but I used a sketchbook and my own crafty supplies.

]]>https://durgastoolbox.com/2018/01/01/thenewyear/feed/3peaceofmymindparentSay my name, say my namehttps://durgastoolbox.com/2017/05/17/say-my-name-say-my-name/
https://durgastoolbox.com/2017/05/17/say-my-name-say-my-name/#commentsWed, 17 May 2017 16:14:40 +0000http://durgastoolbox.com/?p=1677Continue reading →]]>Having just hit the four-year mark of living “far, far away,” I’ve been wrestling with my American-ness lately. Not in terms of politics or current affairs, just generally about where my American identity appears on the Venn diagram of me.

Culture is easiest to see when you step outside of it. Having a culture is what gives that exciting electricity when looking out the window of a cab on the way from the airport in a new place. Sometimes stepping out of one’s culture reveals that deeply held truths are actually just opinions. I see this in the flares of annoyance I feel around unnecessarily time-consuming recycling systems (my kingdom for a single-stream receptacle with curbside pick-up!) or the unspoken social conventions when meeting someone in a public doorway (clearly it makes sense to hold the door…or maybe not).

I’ve made some accommodations to my new homeland. I’ve set my calendar app to start my week on Mondays. I celebrate Easter Eve. (Don’t ask why, because I don’t know.) I make stronger coffee, and I try to drink it sitting down. It just happened.

Other concessions are harder to make. I still prefer to American books, podcasts, TV and movies. It’s not just a lazy language thing, but the settings and the references. It’s about seeing the world with an American gaze.

There’s another aspect of cultural identity I’ve been thinking about lately: its purpose of providing contours to my otherwise diffuse psyche, like personality eyeliner. A lifetime of fourth of July sparklers, yellow school busses and two-for-Tuesday rock blocks has resulted in a very particular person who is me. If I let this container go, will I still be me? Of course I will, but will I really?

But what happens when cultural identity is not so much a vase for our bouquet of personal quirks, but more of a box, closing us off? Can it be made permeable? I think so. With little conscious effort, the box is becoming more of a butterfly net.

Take my name, for instance, for which I have most definitely not nailed down a consistent pronunciation. Some days I introduce myself and pronounce its ‘r’ with such an American accent that I risk swallowing my tongue. Other days I’m happy to let it softly tap the roof of my mouth, behind my front teeth, in the way that my new language wants it to be.

Some days the container is more permeable than others. I feel slightly more invisible, more diluted, but also more connected.

I have other containers. Woman. Mother, even Special Needs Mother. Employee. Nearing 50. Immigrant. Each one has its own comforts, its own limitations.

I’d be really curious to hear from others whose identities have become more like butterfly nets. What made you aware of your containers? Did you find parts of you that transcend labels? What are they like?

]]>https://durgastoolbox.com/2017/05/17/say-my-name-say-my-name/feed/2peaceofmymindparentOvercoming paralysis with a single stephttps://durgastoolbox.com/2017/05/08/baby-step/
https://durgastoolbox.com/2017/05/08/baby-step/#commentsMon, 08 May 2017 18:10:10 +0000http://durgastoolbox.com/?p=1555Continue reading →]]>In a recent stress dream, I sat in an airport coffee shop knowing I was supposed to board a plane, but with no recollection of when the it was going to take off or from which gate. Despite being surrounded by information counters and departure displays, I just sat and sat, paralyzed and ashamed, with no sense that there was anything I could do.

Of course, these stress dreams usually occur for a reason. My son has been getting hurt lately due to an unusual symptom that makes him fall down at sudden noises, and I’ve known for a while that it’s time to do something about it if I want to keep him safe. But the anecdotes I’ve heard from other parents who have kids with this rare syndrome have given me the impression that there aren’t really any good solutions, and each one caused its own negative feeling. The options appeared to me to be as follows: have him start using a wheelchair (makes me sad to think of limiting his mobility on purpose), start on heavy-duty personality-deadening anti-psychotic medication (ugh!), finding a helmet or brace or full body bubble wrap (makes me worry that he will incur even more stares than normal), or collaborating with industry for new applications for existing technology for sound-blocking headphones (makes me feel exhausted just thinking about it), etc, etc. Or I could just doing what I’m doing now, holding my son’s hand whenever he is standing up, even in the house (which is making me feel strung out). So I have been doing nothing, just sitting at the airport waiting to miss the plane.

This morning my husband and I had a quick huddle: I would ask the parent community of my son’s syndrome for their advice, my husband would research headphones. Within minutes of posting my inquiry to the Facebook group (“Help! It’s time! Tell me what you did and help me figure out what to do!”) I had responses. Not perfect answers, but ideas. I realized that many of my fears were completely exaggerated. The drugs weren’t all bad. There was a special walker that could work. The wheelchair wasn’t the worst thing. And most of all, there was company and commiseration.

My recent dream hit all my nightmare buttons: being late, unprepared and disorganized, inconveniencing and disappointing others, appearing and actually being incompetent (two separate but equally humiliating fears). But what really scared me in the dream was observing myself be unable or unwilling to do anything about it, the acceptance of paralysis. Today reminded me that there are plenty of times I’m scared stiff, and that sometimes all I need to do is to take just one small step, especially when that step is asking for help and companionship. Because being afraid is bad, but being paralyzed by that fear is the real nightmare.

Do you have a scary aspect of your child’s care or development that’s got you frozen? What small action could you take that could help you get unstuck–even if it’s as simple as asking for company?

]]>https://durgastoolbox.com/2017/05/08/baby-step/feed/8peaceofmymindparentGetting off on the wrong foothttps://durgastoolbox.com/2017/04/03/gettingoffonthewrongfoot/
https://durgastoolbox.com/2017/04/03/gettingoffonthewrongfoot/#commentsMon, 03 Apr 2017 19:15:47 +0000http://durgastoolbox.com/?p=1476Continue reading →]]>“Louis, this feels like the beginning of a beautiful friendship” says Humphry Bogart as Rick Blaine in Casablanca. I don’t recall what Louis had said or done to prompt Bogie’s remark, but it certainly wasn’t whatever happened to me today when my son’s new doctor’s office called.

Walking to the bus on my way home from work, my phone rang. Blocked caller ID, which for me means only one thing—health care. I answered despite walking on a dusty, busy highway with a nearly dead cell phone. “Hello, this is the XX office at YY hospital. Your son had an appointment today at 1pm. I’m calling to find out what happened.”

My mind started racing through the pile of mail on the kitchen counter. No, I would have remembered if we had been “summoned,” as I like to call it; in our new country, the overwhelming majority of health care follow-up and specialty appointments are scheduled by health care letter that lands without warning, sometimes with as few as three days notice of the appointment but usually about two weeks. The assumption must be that people are happy to take off work to go to these appointments, because the process of rescheduling them usually involves finding one’s way to a phone during a very limited “phone time” window, nearly always during business hours. Busy signals, call back queues–and most perplexingly, sometimes the only option is to cancel the appointment and then wait for another summons, hoping that the next appointed time spat out by the scheduling roulette is better. If not, see step 1.

But back to the dusty highway. Later searching of the kitchen counter pile confirmed that I had in fact never received notice in the mail, and I confidently said so. “So you’re saying you never got our letter? It was mailed out on March 14,” the nurse said curtly. Clearly, she didn’t believe me. “Well, I guess we’ll have to reschedule it,” she said. “I guess so,” I said, equally incredulously. What exactly was she hoping I would say? “No, let me fly counter-clockwise around the globe and reverse time?” She said she’d send a new time by mail, and I managed to get her to schedule the appointment right then, to avoid having to move heaven and earth at work at a later date. She curtly said she’d still send me the mail, and follow up with a text reminder. “Fine, do whatever you want.” I’m sure she could hear my eyes roll.

I’d hazard a guess that hundreds of thousands of health care visits were missed around the globe today because patients didn’t know they had one, didn’t understand why they needed to be there, or found the rescheduling process impossible. Or maybe because they hadn’t even had a chance to open the mail. Hundreds of thousands of hours of wasted clinic time. Irritation and suspicion all around, at the tender point in the relationship when we should be building trust and confidence.

Patronizing finger-wagging and mistrust on her end. Irritated petulance on mine. Is this the best way to start a beautiful friendship? I don’t think so. I wonder what Bogie would say to that.

]]>https://durgastoolbox.com/2017/04/03/gettingoffonthewrongfoot/feed/4peaceofmymindparentSkärmavbild 2017-04-03 kl. 19.29.30.pngParenting in a hospital, then and nowhttps://durgastoolbox.com/2017/01/29/parenting-in-a-hospital-then-and-now/
https://durgastoolbox.com/2017/01/29/parenting-in-a-hospital-then-and-now/#commentsSun, 29 Jan 2017 10:27:21 +0000http://durgastoolbox.com/?p=1208Continue reading →]]>Despite the fact that my son is considered a “sick kid”—a child with multiple, chronic conditions—he actually hasn’t been in the hospital for years. About a month ago, his winter cold turned into pneumonia, and we’ve been reacquainted with hospital life with a vengeance. Parenting a child in the hospital for the first time in nearly a decade, I can’t help but notice how I’ve changed.

The changes in me reflect what I’ve learned from being active in health care advocacy and improvement and may predict the kinds of patients and families the health care system needs to be prepared to work with. Here are some of the differences between then and now:

I write things down. I have a notebook on the table next to me where I jot down when medications or treatments are given, when tests are taken and questions I want to remember to ask. I’ve also brought in a white board that hangs in plain site for everyone, and it’s there my husband and I post the questions we want staff to answer or where we list things we need. It’s interesting to watch how staff have started turning to the board during rounds or at shift change and pro-actively addressing things on it.

I look things up. In the past I relied on staffs’ explanations of what was happening. Now I look up terms, conditions and treatment that I don’t understand or just try to learn more when things don’t make sense to me. I also know more about how to tell the difference between trustworthy information and speculative advice.

I consult my on-line patient community. My son has a very rare genetic syndrome, and sometimes the care team has questions about whether the unusual presentation of some of his symptoms are related to this syndrome. Luckily, the family community we have on Facebook can be a resource—maybe not with the academic rigor that scientific articles offer, but it’s great to have a place to turn for info.

I ask better questions. In addition to writing my questions down so that I don’t forget them, I also ask questions to clarify and confirm what I just heard, or questions about what should happen next so I can prompt folks if it doesn’t (like what time the next pain med will be given). This is definitely a learned skill for me, and in health care it’s often taught to health care workers as a technique called Teachback. Providers as encouraged to prompt patients and families to summarize and repeat back what they just heard as a way to ensure that they’ve understood. No one is asking us to do this at the hospitals we’ve been in, but we find it helpful to do it anyway.

I am better at summarizing my concerns. I have learned that being able to succinctly communicate relevant history and concerns saves time and increases my credibility with staff, which in turn means that they listen when I talk. I wrote about the SBAR techniques years ago, and it’s especially useful when you’re in the hospital. When a group of doctors, residents, interns and specialists walk into the room, it helps to be able to get your concern across quickly.

I am better at communicating what’s important to my son and to our family. There is rarely only one treatment option in any given medical situation. When there is more than one choice about how to proceed, I want my son’s priorities to be taken into consideration. It’s up to me to let them know who he is as a person and what his priorities are. I don’t always know for sure, and I let them know that, too. If I can see that he’s anxious and they want to bring in five students to examine him, I’ve learned to say no. If he hasn’t slept well, I ask them to clean up the medical schedule to limit interruptions the following night.

I have better self-care coping skills that let me stay more present for what’s happening. When my son was younger, I didn’t understand that I needed to take care of myself in order to take care of him. It’s a challenge, but I try to prioritize getting sleep, eating as best as I can, and staying connected with people and ideas that keep me positive and strong. Given this past month’s political turmoil, that hasn’t been easy or even felt like the right thing to do at times.

I better understand and respect the roles of the professionals on my son’s team. I used to think that the doctor was the boss of the care team, and that everyone else was there to do the doctor’s bidding. Now I understand that each professional group has its own focus, modality and power. I try not to waste doctors’ time with nursing issues, and vice versa. I appreciate the creativity and problem solving of the physical therapists and the child-life specialists, and ask for their help. I value the work of the cleaning staff and the food services personnel, and I try to make sure they know it. I know that the radiologist won’t give me much info on what they see on the ultrasound unless I ask in a very particular way. Knowing who does what saves time and prevents frustration.

I consider myself part of my son’s health care team. In the past, I used to see myself as part of my son’s entourage, and the health care providers as his care team. Now I think differently. I know that whether or not the hospital staff see me as such, I am part of his care team. I know his medical history and priorities better than anyone. I often know the most about his genetic syndrome. I am sometimes the only person who can literally understand what he says. I know that my vigilance can prevent errors and increase his safety; people make mistakes and hospitals are not always healing places. I know that my involvement can reduce the length of his hospital stay. And if nothing else, I know that the hospital staff is too busy to get his food, bathe him, make him comfortable and keep him sane—and these are all critical to his health. So I am part of his team. Therefore, I expect to be part of treatment decisions. I expect to be able to sleep in his room and be with him around the clock. I expect to be told about his condition using actual medical terms, not just vague notions of him being “very sick.” I expect to be included in rounds. I expect to know what tests are being done, and I expect to see those test results as soon as possible. I expect to be able to have a say regarding who is on his care team. I expect to know what his providers are concerned about. In short, I expect to be treated as part of his team. (In fact, I consider him as part of the team, too, but that’s a topic for another day.)

I show the staff what my son is like when he’s healthy. My son was really sick for a while there, and was barely conscious at times. Combined with his developmental disability, his symptoms made it difficult for those who didn’t know him to see him for who he really was. We created a photo slide show on his iPad of pictures that showed him happy and healthy, and we had it playing during shift change and rounds. We hung his smiling school photo above the hand sanitizer. During this past month, one of his nurses watched the slide show and turned to us and said, “OK, that’s what we’re aiming for.” Seeing him healthy helps everyone interact with him in a way that encourages healing.

I still have so much to learn. I think health care does too. I’m not sure “the new me” has always been welcomed by staff during the past month. Hospital procedures are clearly the product of an earlier time, when patients and families were passive objects of health care, and providers were the only experts. Things have changed, and these changes are at times rather painful for all of us, patients and providers alike. Hopefully my experiences can give a small glimpse in how more active inclusion of parents when their child is hospitalized can show where we are headed, and why we might just want to get there faster.

]]>https://durgastoolbox.com/2017/01/29/parenting-in-a-hospital-then-and-now/feed/14peaceofmymindparentI came in last. And it was great.https://durgastoolbox.com/2016/05/30/i-came-in-last-and-it-was-great/
https://durgastoolbox.com/2016/05/30/i-came-in-last-and-it-was-great/#commentsMon, 30 May 2016 08:26:10 +0000http://durgastoolbox.com/?p=1153Continue reading →]]>I ran a 10 km road race this weekend, and I finished dead last. And it was great.

I wasn’t expecting to win. When I registered, I figured that like in the many festive road races I’d run before, I’d simply blend in with the pack, my physical mediocrity invisible among the bell curve of humanity. It’d be a great reason to get some good runs in early in the season, and I’d start the summer off in better-than-normal-for-me shape. This one would be even better because it was passing through my neighborhood, even traveling along my normal loop at certain points, so it was surely convenient.

Showing up at the starting line to pick up my number, I learned that there were just 60 of us, nearly all of whom were wearing such technical gear that it was obvious that I was out of my league. Incredulous that things could be this bad, I laughed it off, but within about two minutes of the crack of the starting pistol, I could see that the my fellow 59 runners and I were parting company.

This put me immediately in an interesting psychological state. Because I really, really hate being last. I hate simply being bad. As a child, if things didn’t come really easily to me, I’d quit. Ballet, softball, guitar, honors math. So I excelled at everything I did, because I only did the things at which I excelled. Carol Dweck calls this fixed mindset, in which we believe that our character and talent are static and determined early in life. Clearly it’s less preferable to growth mindset, a viewpoint that thrives on challenge and sees it “not as evidence of unintelligence but as a heartening springboard for growth and for stretching our existing abilities,” (as written in Maria Popova’s excellent summary of Dweck’s research.)

Being bad at something, especially sports in a group, has in the past awakened a deep sense of shame, and sure enough, shame planted itself on my shoulder for a good view of the unfolding events about 500 meters into the run. Lately, I’ve also started noticing that when I’m ashamed, I lash out with blame. That was there too. Blaming the organizers for doing such a pitiful marketing job, blaming the other runners for being so gifted, even blaming the receding glaciers for leaving the landscape so hilly. This very short animated video of Brené Brown’s wisdom on blame sums up how blame is simply another attempt at escaping an uncomfortable emotion.

It would have been normal to quit, but I guess all these years of listening to people like Jon Kabat-Zinn and Pema Chodron have had some effect. They’re always saying stuff like “mindfulness is simply the moment-to-moment paying attention to what’s happening without judgement” and even more simply: “Don’t bite the hook.” And by that I have understood that when an uncomfortable feeling shows up, there can be some value in not trying to turn it off, and instead just observe yourself feeling it. Easier said than done. But at some point during Kilometer 1 of this humiliation, it struck me that this could be an opportunity for some major not biting of the hook. I could allow the anger, blame and shame to rage on the inside, while my legs slowly carried me along.

The kilometers passed, and I fell further and further behind. Every several hundred yards, there was a volunteer stationed to cheer people on and make sure we didn’t lose track of the trail. Each such encounter was a renewed opportunity for embarrassment, and I imagined that they were all in communication with each other about this pear-shaped, middle-aged, out-of-shape lady who was wasting their Saturday evening. I apologized to each of them for being so slow and thanked them for waiting, grateful for the ones who didn’t jump in their car and dash off seconds after I passed.

Eventually, my thoughts turned to dropping out, and I started formulating a plan about how I would take off my number and hand it to one of the officials at the next check-in. The problem was, I lived near the finish line, and I’d still have to run the entire way home anyway. I found myself thinking that I’d run just a little bit more, and hit a rather long stretch during which I was on my own.

I was still feeling pretty crappy but noticed that other thoughts started showing up. “Nothing changes if nothing changes,” I watched myself think. Dropping out would simply reinforce that I was a quitter. Then I thought that while it might feel terrible to finish last, it would definitely feel worse not to finish at all. At the top of a hill I started thinking about what kind of message would I be sending to my daughter if I dropped out, and what a gift it might be to show her, just once, that it was ok to be bad at things. I thought about my son and how, because of the way society is rigged for people without his cognitive and physical disabilities, he often comes in last in life. I suddenly appreciated his grace and dignity in the face of constant messages of not being good enough. Could this experience give me insight into his experience?

I thought about the people who weren’t running but had wanted to. Maybe there was someone who would see me shuffle by and think, “If she can, I can.” And finally, I started questioning my projections on the volunteers. Why did I assume that they were bored and impatient for me to finish? Maybe they deserved better.

There was a water break at around Kilometer 6. I was out in the middle of the woods with two teenage girls who made me feel like this was the most fun they’d had in weeks, confirming my theory that projections are some powerful magic. I asked them if they’d ever been last. Yes, they said. Any tips? Well, one of them said, you’re doing way better than the people who didn’t sign up. And at that moment, I knew I’d finish.

All of a sudden, I was at Kilometer 8, then 9. For the last 100 meters, I was cheered on by everyone who had volunteered at the registration and the starting and finish line; it felt like there were more people than had run in the entire race. I expected it to be the stake in the coffin of humiliation, but some knot has loosened, and it was actually great. One of the shy teenage boys who I’d seen out volunteering on the course even came up to me and said that he thought I worked really hard. Not sure it was meant as a compliment, but I took it as such. I think it was.

And suddenly…I was done. I looked down at the medal that someone has slipped around my neck at some point and realized that nowhere on it did it say that I’d finished last (by a lot). Maybe it was the endorphins or the dehydration, but I took this selfie and realized that the only thing I felt was great. Simply watching the shame and the blame unfold without reacting had released some deep behavioral patterns and habitual thoughts, like touching a soap bubble with my finger.

So this is what coming in last feels like. My legs are sore, but my spirit is soaring. I can live with this.

]]>https://durgastoolbox.com/2016/05/30/i-came-in-last-and-it-was-great/feed/11peaceofmymindparentIMG_6455I made it possiblehttps://durgastoolbox.com/2016/04/03/i-made-it-possible/
https://durgastoolbox.com/2016/04/03/i-made-it-possible/#commentsSun, 03 Apr 2016 14:41:36 +0000http://durgastoolbox.com/?p=1081Continue reading →]]>This afternoon I hemmed a pair of curtains with stitchwitchery, that magical roll of some sort of tape which, when ironed between two pieces of fabric, makes a needle and thread unnecessary. I have no idea what it’s made of.

There was a point in my life when that would have been unthinkable. Granddaughter of a skilled garment worker and a woman who can find her way around a loom, I didn’t just wear the mantle of women’s handiwork proudly: I carded, spun, dyed, wove, sewed and embroidered it myself.

Last year I tried to grow flowers from seeds for the last time. Well, that’s not true; a packet of sunflower seeds arrived in the mail for my son, and I planted them today. But I have no expectation that they will make it. The fierce discipline required to provide exactly the right heat, but not so much that they get leggy, and moisture, but not so much that they get moldy, is slightly out of my reach. They’re on their own.

There was a time when I would have made jam from wild berries I picked in the woods. That happens rarely these days. I’ve become a woman who, when asked the question, “Did you make this?” coyly answers “I made it possible.”

Looking at the curtains hanging now, I realized that there is no guilt or disappointment, no sense of “cheating.” Mind you, I have nothing against homemade things. I may even make my own pie crust at Thanksgiving. There is joy in creation and self-sufficiency. But I do mind how I easy it is to judge myself based on how “from scratch” my life is. I realized today that letting go of making certain things has freed up time and energy for making other things possible. Which is why I’m telling you, in case you too are the kind of person who beats yourself up. Personally, I’m going to outsource that, too.

]]>https://durgastoolbox.com/2016/04/03/i-made-it-possible/feed/1peaceofmymindparentTurning the page on readinghttps://durgastoolbox.com/2015/10/16/turning-the-page-on-reading/
https://durgastoolbox.com/2015/10/16/turning-the-page-on-reading/#commentsFri, 16 Oct 2015 16:32:36 +0000http://durgastoolbox.com/?p=1075Continue reading →]]>I love reading. I love reading fiction, being transported to worlds real and imagined, past, present or future. I love a good memoir, how I get to slip inside another person and see the specificity of their story and universality how our stories are alike. I love reading poetry, especially the kind that aims a tight spotlight on just this moment and reminds me in a few short lines of the link between the mundane and the divine.

At age 13, my son still struggles to say the alphabet correctly all the way through. He has spent hundreds of classroom hours matching, tracing, cutting out, pasting and pointing to letters and words, without much of it sticking. I expect that by adulthood he’ll have a number of site words that he’ll recognize, like his name or words like “exit” or “stop” (or “X-box”) that have a context and format that make it possible for his brain to transform lines and shapes into meaning. But novels and texts are unlikely.

The thought that he won’t have the opportunity to experience reading leaves me sad. As a person who finds wisdom, adventure and joy in reading, coming to terms with my son’s situation has been…well, it hasn’t.

A couple of weeks ago, I was talking with someone who happens to have dysmelia—he was born with only one hand. I haven’t known him long, but long enough that I don’t notice his physical difference anymore. If anything, I simply note how graceful he is in the way he moves around in a two-handed world. He is retired now, and it seems to me he’s had a satisfying career and enjoys a rich and enjoyable life.

He was talking about how he is sometimes contacted by parents who have recently given birth to a child with dysmelia; it’s clear, he explained, that the parents are grieving for experiences their children will never have. But this grief is often based on their own attempts to replay their own childhood in their minds and attempt to live it one-handed, and that often just doesn’t work. He tells these parents that he has participated in research in which his left hand was held up to a mirror in order to trick his mind into believing that he had a right hand; the fMRIs taken while he looks at the mirror show without a doubt that the place in his brain that should light up when he thinks about a right hand has simply been assigned a new task. It has been filled, he chuckled, with more sensible things. Because he has never had this hand, he can’t say that he’s “missing” a hand or that he misses it. And his life, while not without challenges, has been just fine.

I came away from our meeting with my head spinning. I thought about how other people experience immense joy because they are great at physics, or speak Spanish, or play the piano. Do I ever feel sad that I can’t do those things? Not at all. I take pleasure in other things that I’m good at or enjoy. So why do I persist in grieving for my son’s relationship to reading, simply because I enjoy it? Could this feeling be not really grief, but pity? Am I actually insulting to my son and his gifts and his reality by feeling sorry for him instead of helping him find wisdom, adventure and joy in other places? It suddenly seemed so.

I wrote this first draft this morning. This afternoon someone posted this picture on Facebook, with the comment about how this so perfectly captures the magic of reading. “I opened a book and in I strode; now nobody can find me.” The sentiment has definitely been true for me. I noticed that the place in my gut that would have normally twitched was actually still. And that’s not something I could have learned in a book.

There’s something unfolding and I’m so ambivalent about it that I don’t even know how to start this post. That happens sometimes when I try to write about tricky feelings. Usually the act of writing provides a clear point of view, enough that I can scroll back up and re-write a couple of sense-making introductory sentences. If you’re reading this, it’s safe to assume that my ambivalence remains.

Two-plus years into life in Sweden and we are tapping into a service that didn’t exist for our son, with his complex developmental disabilities, in the US. It’s affectionately known in Swedish as kortis, which loosely translates as shorty, and is literally short for korttidsboende (short-term residence).

Kortis offers kids with significant cognitive, behavioral or physical disabilities a place to spend some time away from home, usually a weekend a month, a week or two during the summer, and sometimes one or more nights during the week depending on the person’s needs and family situation.

It’s good for a bunch of reasons. Social workers refer to this service as respite, which is so uncommon in the US that if you’re like me, you may need help figuring out how to pronounce it. (It’s RESS-pit.) For us, that means the chance to sleep in, move more slowly, finish a thought, grab a daytime movie, to catch up on home improvement projects, and spend some uninterrupted time with our daughter. (Yes, I’ve been daydreaming.)

The benefits for our son are many; he doesn’t normally get sleep-overs or sleep-away camp, but suddenly he’ll have weekends filled with outings, movie nights, good food and time away from his sometimes over-protective, boring and/or exhausted parents. He’ll get the chance to practice skills that he’ll need when it comes time to move away from home, too. Most importantly, it’s a stimulating change of scene for a kid whos world could stand to be a bit bigger.

And in our new life, kortis is available to us, close to home, with plenty of qualified staff. And it’s free.

Even so, there’s a lot I don’t feel good about. For starters, there’s the terror of letting my more-vulnerable-than-average kid spend a prolonged amount of time with adults who aren’t family. Do I need to get into the depths of that terror? Compound it with how easy it is to feel like a failure as a parent when you finally admit that in order to get your family life to work, one of your kids will spend time away from home.

But after two years of telling the agency powers that be, “thanks but no thanks,” we finally have to admit that our son has needs that we can’t meet. We’re resolved to make it work.

It’s been several months of slow transition: first our tour of the kortis house, then a meeting with the in-take coordinator. Then our son had dinner at the house (once with us tagging along, then once without us), and a first attempt at a sleep-over that ended with a call home at 11:30pm when our son was too excited to fall asleep. Tonight my husband is camping out with him at the house, in an attempt to get him through the night. Several more baby-steps may be needed until he adjusts. Until we do too.

Deep down, I know that it will be great for all of us. But for now, I’m sorry-grateful, regretful-happy. That kortis is an option for us. And that we need it.

]]>https://durgastoolbox.com/2015/09/29/sorry-grateful-regretful-happy/feed/4peaceofmymindparentWait for ithttps://durgastoolbox.com/2015/09/02/wait-for-it/
https://durgastoolbox.com/2015/09/02/wait-for-it/#commentsWed, 02 Sep 2015 18:02:53 +0000http://durgastoolbox.com/?p=1061Continue reading →]]>I was thrust out of sleep last night for a few brief seconds into total free fall, just barely this side of consciousness, unable to recall where I was, who I was, why I was. For a moment I struggled to orient myself in space and time, until I heard myself say in a calm, competent voice: “Wait for it.” A total sense of trust washed over me, a sense of excitement even (who might I be?) until finally I slammed back hard into the labels and perceptions of me—my name, my place on the globe and in my bed, a knowing that today was Tuesday and that I’d go be going to work in a few hours, coffee first. Then it all receded and I slipped back into sleep.

My son turned 13 this summer. As a parent, there is a sense of barreling through the unknown now. After so many years of trying to make a childhood, it’s already time to start building an adulthood. We leave the Beginning behind, and head into the Middle. I know it’s a complicated process for all parents, but this is different, or maybe just a heightened, hi-octane version of the same thing. More intentionality, more paperwork, more letting go whether or not if feels like it’s time. For a child who is so far behind his chronological peers in so many ways, he must begin to prepare for his adulthood long before most the others. And we are here to help him, making decisions about which skills to focus on, which goals to scratch off the list. Mostly, it’s about accepting, for better or worse, that adulthood is coming, and even though he may need help like a child in some ways forever, treating him like one isn’t what he wants. Even when it is, it may not be possible.

What I wouldn’t give to feel that sweet sense of safety I had this morning during this process. To trust that the answers will come and “embrace the questions” of this transition. To perceive the unknown as no problem, exciting even. But I’m not there yet. I guess I’ll have to wait for it.